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The AIDS Coalition to Unleash Power New York (ACT UP), the flagship branch of the historic and global AIDS organization, attracted controversy on social media this summer around statements related to the Covid-19 pandemic. On July 19, ACT UP angered disabled and Covid cautious people with a <\/span>Twitter thread<\/span><\/a> that aligned people who criticize others for not wearing a mask with the historic criminalization of HIV patients. As <\/span>many pointed out in response<\/span><\/a>, people who wear masks are the vulnerable marginalized group <\/span>currently being stigmatized and criminalized,<\/span><\/a> not unmasked people who spread airborne disease. The thread also offered the nihilistic and deadly proposition that \u201cpeople cannot prevent themselves from getting Covid in perpetuity.\u201d\u00a0<\/span><\/p>\n A week and a half later, ACT UP posted an <\/span>apology for those tweets<\/span><\/a>, which cited \u201ceugenics,\u201d \u201cinstitutionalized ableism,\u201d and \u201cwhite supremacy\u201d within the organization. The apology was ridiculed by some prominent queer and leftist accounts. A portrayal emerged of ACT UP being taken over by online zealots, often described in ableist terms, like <\/span>\u201cpsychotic,\u201d \u201cfreaks,\u201d<\/span><\/a> and \u201c<\/span>weird hypochondriacs<\/span><\/a>.\u201d<\/span><\/p>\n \u201cI’m so sad that people are taking the apology as ‘ACT UP was bullied,’\u201d said one member of ACT UP\u2019s Covid-19 working group, which wrote the apology.<\/span><\/p>\n Behind the scenes, the real story around these tweets and their fallout is more complex and still ongoing. It\u2019s about a relatively small group of long-time ACT UP members (of all ages) fighting to hold onto control over the organization at the expense of expanding its base, inclusivity, and even its own bylaws and principles. While not the majority at every meeting, these members have contributed to a culture of fear and distrust within the organization<\/span>. They <\/span>have also, at times, stigmatized or belittled being sick, angry, and loud\u2014ironic, given <\/span>ACT UP\u2019s famed legacy<\/span><\/a>.<\/span><\/p>\n More than 15 current and former ACT UP members helped tell this story in interviews. Most requested anonymity, either to keep working with the organization in good faith or to avoid harassment, which <\/span>has been happening around this controversy<\/span><\/a>. Sources also shared audio, emails, screenshots, and other evidence.<\/span><\/p>\n While ACT UP\u2019s mission is focused on HIV\/AIDS, the organization does allow members to pursue other goals under its purview. The <\/span>ACT UP New York website<\/span><\/a> devotes significant attention to the Palestinian cause. But ACT UP hasn\u2019t easily found internal consensus around Covid. This is perhaps surprising, given that Covid is another viral pandemic, one that <\/span>disproportionately disables<\/span><\/a> and <\/span>kills HIV-positive people<\/span><\/a>.\u00a0<\/span><\/p>\n \u201cIt doesn’t surprise me,\u201d one long-time New York-based queer activist said about HIV activists buying into the \u201cdisinformation of the Biden administration on Covid.\u201d This activist cited a \u201clegacy of stigma and trauma\u201d in the HIV community around illness and disability, a consequence of historic isolation, discrimination, survivorship bias, and more. For additional context, <\/span>The Sick Times recently reported<\/span><\/a> on the HIV community\u2019s lack of attention to Long Covid.\u00a0<\/span><\/p>\n ACT UP has been dealing with understandable tension between two disease communities that have distinct ideologies shaped by their specific pathologies and social contexts. And, like many disease-specific organizations, it hasn\u2019t integrated itself into the broader disability community. It would take meaningful effort to resolve these tensions, but some long-time members are actively resisting that work.\u00a0<\/span><\/p>\n <\/p>\n <\/p>\n With the July 19 thread and some other tweets that day, ACT UP was taking sides in a heated Twitter debate that was already rife with misconstruals and straw man arguments. Briefly, it started when <\/span>writer Ashley Reese minimized Covid\u2019s harms<\/span><\/a>, quote-tweeting another account. That person then <\/span>pointed out <\/span><\/a>that Reese had transmitted Covid to her terminally ill husband, which Reese had previously acknowledged. That person was accused of calling her a \u201cmurderer,\u201d which didn\u2019t happen. Unfortunately, a couple of people did take the discourse that far, giving ACT UP and others mileage to portray all Covid conscious people involved in the conversation as extremists.\u00a0<\/span><\/p>\n \u201cThey should have never fucking weighed in on Ashley Reese,\u201d one ACT UP member stated, a sentiment shared by many other members.\u00a0<\/span><\/p>\n ACT UP’s initial thread was a surprise to many in and out of the organization. Internally, it had a Covid-19 working group, which had attracted many Long Covid patients and Covid cautious people to the organization. It had also <\/span>instituted a mask requirement<\/span><\/a> at meetings and actions. Externally, the organization promoted Covid mitigation on social media. Some disabled people described feeling \u201c<\/span>heartbroken<\/span><\/a>\u201d and \u201cdemoralized\u201d by the tweets. Another <\/span>ally was lost<\/span><\/a>, after years of steady abandonment by leftist organizations.<\/span><\/p>\n As it turned out, the posts were not official statements. <\/span>Casey Elise, an ACT UP member,<\/span> identified herself<\/span><\/a> on Twitter as one of the thread\u2019s co-authors. She had partnered with a member of the organization\u2019s social media team who had access to its accounts.\u00a0<\/span><\/p>\n Disabled activists put together threads of Elise\u2019s recent public statements on Covid in order to understand the motivation behind the thread (disclaimer: <\/span>I was among them<\/span><\/a>).\u00a0 <\/span>On Instagram<\/span><\/a>, Elise stated that immunocompromised people could \u201cgo to [the] Govball and take off your mask without getting sick\u201d\u2014and that it was \u201cableist\u201d to say otherwise.\u00a0 Observers wondered if she was a spokesperson for ACT UP or a <\/span>\u201crogue agent<\/span><\/a>\u201d using its account.<\/span><\/p>\n In fact, Elise\u2019s posts came as a shock to many ACT UP members who had worked alongside her in the Covid-19 working group and never anticipated that she had those views. She had a <\/span>popular Tik Tok account<\/span><\/a> that discussed Covid risks.<\/span><\/p>\n From early on, it was clear that there was dissent within ACT UP over the tweets. \u201c<\/span>The thread in question was written and released without the knowledge or consensus of the ACT UP NY C19 Working Group,\u201d one member wrote in an email response to a media inquiry I sent the organization.\u00a0<\/span><\/p>\n Yet, <\/span>another member, Jason Rosenberg <\/span>took to Twitter to support the thread<\/span><\/a> while attacking me. He accused me of \u201csurveilling\u201d Elise, the kind language that <\/span>others were also using<\/span><\/a> to describe people sharing her comments, which were publicly available for anyone to see. <\/span>Rosenberg has a substantial following and, at the time, listed ACT UP in his Twitter profile.<\/span><\/p>\n Facing backlash, Elise <\/span>announced<\/span><\/a> her departure from Covid activism and subsequently left ACT UP. Two weeks later, she posted<\/span> a long apology<\/span><\/a> on Instagram for her \u201cpoorly thought-out\u201d posts and for being \u201cdefensive and dismissive.\u201d She cited \u201ccoming to terms with being newly immunocompromised.\u201d<\/span><\/p>\n I reached out to Elise via Instagram. \u201cI deeply regret saying I plan to leave COVID activism,\u201d she wrote in response. She plans to \u201capproach it differently,\u201d by focusing more on her community. She clarified that her intention has been to promote \u201c<\/span>understanding that you can\u2019t control how people behave and the risks they take.\u201d In her apology, she recognized that her \u201cimpact\u201d didn\u2019t match her \u201cintention.”<\/span><\/p>\n ACT UP made it easy for Elise to use its prominent, well-respected account to post tweets that she later understood to be harmful in ways. The tweets created an uproar, upsetting hundreds of people, at least. The tweets also seem to have been in violation of the <\/span>organization\u2019s bylaws<\/span><\/a>, which state, \u201c<\/span>The Social Media Team must refrain from unilaterally taking any position on any issue.\u201d<\/span><\/p>\n Nevertheless, the tweets weren\u2019t removed as easily as they were posted. That is partly because of ACT UP\u2019s structure, but it has more to do with who is making key decisions internally and how those decisions are made. The organization\u2019s social media and emergency response teams could have removed the tweets at any time.\u00a0<\/span><\/p>\n <\/p>\n Among HIV\/AIDS organizations, ACT UP is relatively small in contrast to its legacy and impact, with extremely fluid membership and participation. Local branches operate independently with no paid staff.<\/span><\/p>\n In theory, \u201c<\/span>All ACT UP members are leaders as we resist the traditional hierarchies and bureaucracies of other organizations,\u201d <\/span>its website states<\/span><\/a>.<\/span> Membership is granted after only one meeting, and voting membership after three meetings or actions, per the bylaws.\u00a0<\/span><\/p>\n In practice, ACT UP New York operates differently, at least of late. Some long-time members have more power and status in the organization by virtue of their longevity and from holding multiple elected positions on teams or as meeting facilitators. Some of them are members of the Board of Directors, which was seemingly established as a legal requirement when ACT UP became a 501(c)4 tax-exempt organization in 2023, per its public tax return. The organization declined to answer questions about how its board was selected and operates.\u00a0<\/span><\/p>\n Generally, this group of long-time members hasn\u2019t always been understanding about disability concerns, including problems with the Twitter thread. Since the Twitter controversy, some have been using their power and status to push back on reform and transparency, including by arbitrarily changing or ignoring bylaws at whim.\u00a0<\/span><\/p>\n These power dynamics were apparent in a July 29 general meeting held over Zoom, which some members have described as \u201cbizarre,\u201d \u201chostile,\u201d \u201cfascistic,\u201d and \u201ctraumatizing.\u201d<\/span><\/p>\n That meeting seemed to be a reaction to the prior week\u2019s Zoom meeting, on July 22, which took place while the controversial tweets were still live on Twitter. That evening, an influx of new and returning members, some from allied organizations, showed up to air their grievances about the tweets and demand accountability. Angry voices in the Zoom chat called out ableism while others spoke. It was a volatile meeting, but it also ended with a unanimous vote in favor of removing the tweets and posting an <\/span>initial brief apology<\/span><\/a>. Numerous attendees <\/span>tweeted<\/span><\/a> about the meeting, as \u201cDisability Twitter\u201d was <\/span>closely observing<\/span><\/a> how ACT UP would handle the controversy.\u00a0<\/span><\/p>\n The July 22 meeting exposed a need for more dialogue, consensus-building, and education around Covid within ACT UP. But some long-time members chose a very different approach at the next week\u2019s meeting.\u00a0<\/span><\/p>\n On July 29, Brandon Cuicchi, one of the meeting\u2019s facilitators, oversaw an agenda that started with over an hour of speeches\u2014a \u201cdog-and-pony show,\u201d as one member called it. Long-time members gave presentations on ACT UP\u2019s policies and history, the history of HIV criminalization, the organization\u2019s handling of Covid early in the pandemic (\u201cpre-vaccines\u201d), and the like. Most of the speeches seemed like a response to criticism of the controversial thread, even though it had already been taken down.\u00a0<\/span><\/p>\n The presentations seemed better fit for a press conference or fundraising event than the large audience of disabled and Covid cautious people who had returned to discuss the longer apology drafted by the Covid-19 working group.<\/span><\/p>\n \u201cA presentation about how \u2018great\u2019 act up has been re: covid while people ill with long covid are present because of harm done to them by act up is cruel and offensive,\u201d one member posted in the Zoom chat. Others posted that they would have appreciated hearing more about HIV history on any other night.<\/span><\/p>\n The heavy-handed format and tone was extremely unusual. ACT UP meetings usually include brief discussions on current issues and actions, with breakout meetings for working groups, as recent agendas show. That\u2019s been the <\/span>standard format<\/span><\/a>, going back awhile.<\/span><\/p>\n Throughout the July 29 meeting, some long-time members chastised people who used the Zoom chat, describing it as rude and disrespectful to the speakers. Yet, they also freely used the same function to make their own points. The focus on \u201cdecorum,\u201d one member said, was a kind of \u201cmicroaggression.\u201d An organization founded on sick and neglected people expressing outrage was now coming down hard on the same.<\/span><\/p>\n Members were also warned that anyone who tweeted about the meeting <\/span>would be automatically kicked out<\/span><\/a> and \u201clikely suspended.\u201d\u00a0<\/span><\/p>\n The discussion about the Twitter apology was relegated to the last 30 minutes of the meeting, and members were only given one minute each to speak on it. \u201cThey were intentionally sidelining us,\u201d as one member described it. Speakers crammed in their thoughts about the apology, the presentations, and their physical challenges staying that long in the meeting, which ran over.\u00a0<\/span><\/p>\n Bridgette Jones, a young woman with Long Covid and other chronic illnesses who joined ACT UP before the controversy, spoke passionately, while lying in bed, about her fears of being put in a nursing home, her risks of dying, and her life in \u201cyear five of quarantine.\u201d Her testimony countered the earlier presentation that portrayed Covid as a mostly past event.<\/span><\/p>\n Cuicchi and some other long-term members, who had been congratulating each other on the earlier presentations and demanding respect, cut off these speakers and gave them little to no validation. Jones might have been more at home in the 1980s ACT UP than in 2024.<\/span><\/p>\n In an interview, Jones said, \u201cGetting [this treatment] from the group hurts precisely because it mimics almost exactly the kind of willful unseeing that has led to both my medical neglect and social abandonment.\u201d\u00a0<\/span><\/p>\n \u201cThe hostility was so palpable, and I think it really did hurt,\u201d said another member named Miranda, who also joined ACT UP before the controversy and recently left. She called the meeting \u201csurreal\u201d and \u201clike being in detention.\u201d She accused ACT UP leaders of \u201cweaponizing elders against another disease community.\u201d<\/span><\/p>\n The meeting ended with a vote over the <\/span>longer apology<\/span><\/a> drafted by the Covid-19 working group. ACT UP\u2019s emergency response team (ERT) had rejected posting the draft earlier that week because of the language of \u201ceugenics apologia\u201d and \u201cwhite supremacy.\u201d In an email to the working group, the ERT wrote that such language \u201cfalsely implies that our actions support harmful ideologies.\u201d The apology went to a floor vote.\u00a0<\/span><\/p>\n The vote was interrupted more than once by long-time members who seemed panicked over the likelihood that it would pass. So they began changing the bylaws. Suddenly, voting membership required attending three <\/span>general<\/span><\/i> meetings, not including working group meetings. New members, since the controversy, couldn\u2019t vote. Then, a long-time member decided that any abstention votes would be added to the votes against the apology, again contrary to the bylaws. Someone in the chat said they were trying to pull \u201ca Florida,\u201d referring to the 2000 presidential election. Even with those arbitrary changes to the rules, the apology passed at 51%, with 19% abstained.\u00a0<\/span><\/p>\n After the<\/span> apology went up, Rosenberg <\/span>tweeted<\/span><\/a>, \u201cACT UP was infiltrated by bad faith actors that have a limited understanding of how the group operates.\u201d Yet, the apology was written by Covid-19 working group members who were active in the organization before the controversial tweets. That group had organized actions and helped shape ACT UP\u2019s social media presence. Was Rosenberg suggesting the organization was already \u201cinfiltrated\u201d before the recent Twitter drama? He has not responded to requests for comment.\u00a0\u00a0<\/span><\/p>\n The next Monday, some Covid-19 working group members had to miss the weekly ACT UP meeting because they were traveling to Nassau County to testify at a hearing for its proposed mask ban. In an eerie call-back to ACT UP\u2019s July 29 meeting, county officials allowed supporters of the ban to speak first and for longer. Speakers in opposition, including many disabled people in masks, were relegated to the end of the meeting and their microphones were constantly cut off.\u00a0<\/span><\/p>\n Some of ACT UP\u2019s long-time members have spoken out against Republican-led mask bans. But they inadvertently foreshadowed the way that Nassau County officials treated disabled people, who showed up and demanded to be heard.\u00a0<\/span><\/p>\n <\/p>\n After the longer apology was posted, a handful of new and returning members stuck around, hoping to continue their advocacy efforts around HIV and Covid. They were not welcomed by everyone.\u00a0<\/span><\/p>\n Some long-time members focused meetings around finger-pointing and suppression efforts. New members were called \u201cinfiltrators,\u201d despite most having histories of queer activism. <\/span>They weren\u2019t being given access to Zoom links for meetings. <\/span>Some were <\/span>sanctioned<\/span><\/a> for tweeting about their first meeting, on July 22, before the rule was ever communicated to them. Rosenberg was not sanctioned for his tweets about the <\/span>July 29 meeting.\u00a0<\/span><\/p>\n \u201cDo we want the community to join, or do we not?\u201d\u00a0 Miranda asked, noting how meetings were advertised as public at the time.<\/span><\/p>\n When it came time for elections for six-month positions, Cuicchi suddenly forced a vote on a new rule to keep people outside of the New York City area from running for positions, as some new members lived elsewhere. According to multiple sources, members weren\u2019t warned that this vote was coming. It ended up affecting people who had been with the organization for a while.\u00a0<\/span><\/p>\n To justify the new rule, some long-time members claimed that elected members should be able to serve in-person, without consideration of accessibility. Similarly, members have been chastised for using Zoom chat, having their cameras off, or filming in the dark, all of which are <\/span>well-known accessibility tools<\/span><\/a> for many disabilities. These new rules have been arbitrarily enforced.<\/span><\/p>\n Then, on August 26, a newer member was accused, with no proof, of having leaked recordings from a meeting to a reporter. I had just reached out to the organization with questions and mentioned having obtained audio from the July 29 public meeting. The accused member was not my source for the audio, but that person was suspended from ACT UP anyway, with none of the grievance process called for in the bylaws.\u00a0<\/span><\/p>\n In my outreach email, I asked why ACT UP was so distrustful of new members\u2014if the group\u2019s paranoia was \u201cheightened\u201d due to previous incidents with disruptive members, including one who <\/span>filed a lawsuit against the organization<\/span><\/a>. The organization declined to respond.<\/span><\/p>\n Some older members with HIV have described, in meetings, feelings that are understandable. They have shared about feeling a lack of trust in and respect from the new members. They have expressed concern that their organization might start to neglect their needs. Yet, some have also admitted to not being on Twitter and\/or not understanding first-hand all of the accusations being flung around.\u00a0<\/span><\/p>\n Miranda <\/span>and several others have left or backed away from the organization in the last two months due to what they perceive is a \u201chostile\u201d environment, especially towards Covid and disability activists. Another such member described ACT UP as more concerned with \u201clegacy\u201d than \u201cactivism.\u201d\u00a0<\/span><\/p>\n At times, long-time ACT UP members have been explicit about their hostility towards Covid activism. Victor Li, a member of the board of directors who holds multiple elected positions, recently commented, \u201cI thought you hypochondriacs were supposed to be against \u2018eugenics\u2019, lol,\u201d in response to a pro-mask account on <\/span>an ACT UP New York Instagram post<\/span><\/a>. The person was talking about 9\/11 and hadn\u2019t mentioned Covid or masking at all.<\/span><\/p>\n Still, there are small glimmers of hope within ACT UP New York. The Covid-19 working group is still active. The organization\u2019s mask mandate passed with minimal pushback, and the longer apology is still live on social media. A meeting was scheduled to discuss similarities and differences between Covid and HIV. There are even some older members pushing back on the arbitrary and authoritarian actions of late.\u00a0<\/span><\/p>\n In all, the Covid pandemic has presented ACT UP with an opportunity to build long overdue intersectionality among HIV and disability communities. Those intersections are happening already in medicine, as researchers are <\/span>trialing HIV drugs to treat Long Covid<\/span><\/a>.<\/span>Twittergate<\/b><\/h3>\n
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Aftermath: Dissent and Suppression\u00a0<\/b><\/h3>\n
A Culture of Distrust<\/b><\/h3>\n